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Some thoughts on listening to patients

A couple weeks ago, before we started the second leg of our book tour promoting More Than Two, I went to the dentist. I had a couple of old-style silver amalgam fillings that were disintegrating (who, I wonder, was the first person to say “Silver and mercury! I know, let’s put that in people’s mouths!”?), so I decided to pay someone to take a small high-speed drill and root around in my mouth for a while.

Now, whenever I go to a new dental practitioner for the first time, there’s a little speech I have to give. It’s my mother’s fault, really. She has some kind of genetic quirk, you see, that makes her for all intents and purposes immune to common local anesthetics in the Novocain/procaine/Lidocaine family. I appear to have inherited a genetic allele from her that gives me a high degree of resistance to these anesthetics, which is, as you might imagine, more than a little inconvenient when facing a trip to the dentist.

Anyway, the little speech. It hasn’t varied much over the past few decades, and it goes something like this:

Before we get started, you should know that I am highly resistant to local anesthetics like Lidocaine. It’s really, really hard to get me numb. It is probably going to take you a lot of work and multiple tries before I’m numb, and it wears off very quickly.

Now, every time I give this little speech–every single time, with only one exception ever (when I went to an oral surgeon to have an impacted wisdom tooth chiseled out with a backhoe, farm equipment and oil-drilling machinery), the result is always the same: “Oh, pish-posh. I won’t have any trouble at all!”

And then the misery starts.

This last go-round, it took my dentist no fewer than six rounds of injections before I was finally ready to have the old filling carved out. Three rounds in, she jabs me with the needle and I’m all like “Ow!” and she’s all like “you can still feel that?” and I’m all like “remember how I said I am resistant to local anesthetics?” and she was all like “wow, you weren’t kidding!” and I was all like “I’ve had this conversation so. Many. Times. Before.”, though that last part was in my head and not out loud, and…

Yeah.

So anyway, about that. It is perhaps not surprising that some folks might greet claims of being resistant to anesthetics with skepticism–genetic resistance is documented, but uncommon1 (thanks, Mom!)–but to just dismiss them outright, and especially for everyone in the profession to dismiss them outright, seems to me to speak to a systemic problem. And that systemic problem is, we train doctors to be good at all the parts of treating patients except listening to patients, which might be argued to be rather an important bit.

Pseudoscience, quackery (“this random thing cures cancer! Big Pharma doesn’t want you to know, which is why you’re finding out about it in a Facebook group!”), and snake oil “medicine” are huge, and deadly, industries. According to an NIH document reported on NBC, alternative “medicines” (which might reasonably be described as anything that hasn’t been shown to work, since the name for things that have been shown to work is just “medicine”), is a $34 billion a year industry. That’s a lot of herbs, acupuncture, and magic water full of mystical energy vibrations but nothing else.

There are lots of reasons why. Anti-intellectualism is a big one, and the fact that anti-intellectualism tends to be joined at the hip to conspiracy nuttery doesn’t help. Rejection of science, distrust of “big corporations” (except the big corporations marketing herbal supplements, naturally), superstition, wishful thinking…all those things play a part.

But some of the problem is, I think, self-inflicted. Too many medical practitioners are at best dismissive of, and at worst hostile to, their patients’ own self-reported information. There are probably a bunch of reasons for that, from fear of drug-seeking behaviors (and the spectacular fuckedupedness of a medical establishment that doesn’t take pain management seriously is worthy of a blog post of its own!) to simple arrogance.

78 thoughts on “Some thoughts on listening to patients”

Oh, interesting! I have the exact same problem – “You shouldn’t be feeling anything by now!” “I told you about this – I am, and it hurts!” – but I had no idea that it had been studied and linked to genetic factors.

In the broader sense, yes, a thousand times. If you want the vastly more common version of this, look at pain management in women. I remain appalled by the number of doctors – including female ones – who still assume that any complaint from a female-bodied patient is attention-seeking or delicate femininity/the ladybrain’s not understanding what pain should feel like. (I know of more than one case where a woman presenting with a broken bone or nose was told that she shouldn’t need pain management. Gyah.)

I also once read a study that showed that if patients told their doctors that they were fully compliant with their medication schedules, the doctors were on average assuming that said patients missed their required medications about twice a week. Sadly, I don’t think that telling your doc you took a couple of extra sets of your morning tablets each week would correct the misapprehension… *snerk*

FYI, in my third long comment to this post (er, I may have a lot to say on the subject), I have a list of which local anesthetics *have* been effective on my daughter and I (we both have lidocaine insensitivity), and it may be helpful for you to ask for an alternative for future procedures.

For general surgical purposes, Marcaine is the most common and most effective. For dental, Benzocaine gel provides a degree of surface numbing, and Articaine/Septocaine shots are actually very effective and long-lasting.

And, yes — I have a lifetime’s experience of dealing with how doctors treat pain management in women, and it’s utterly infuriating and dispiriting.

(I have a good treatment team *now*, but that’s after a lot of trial and error — and I also have a *diagnosis* which doctors can understand, even though it’s a rare disorder and many doctors have never seen it before. Without the diagnosis, I’d almost certainly be treated as a hypochondriac, because I have systemic issues that result in a lot of different disease manifestations.)

Before I was diagnosed, I *was* treated suspiciously by doctors, even though I was stringently anti-opiates at the time.

And many people take 10+ years to get a correct diagnosis with this disease, so I’ve seen other people with Ehlers-Danlos treated BRUTALLY by health personnel who don’t understand the patient’s symptoms.

I have friends who have experienced things like doctors forcibly dislocating their hips to “prove” they don’t need a brace. Then, of course, the doctor decides they must have congenital hip dysplasia, rather than a connective-tissue disorder — even though the patient is telling them that they experience similar subluxations and dislocations in every OTHER joint in their body.

And it’s a disease that — surprise! — is about 80% female on its face. (It’s actually not a sex-linked mutation, but female hormones can have an enormous effect on its expression — my father and brother had relatively mild symptoms, whereas my grandmother, myself, and my daughter have severe symptoms. You usually develop new symptoms or get worse during puberty, pregnancy, and — oddly enough — menopause.)

Many men are never diagnosed, unless they have an unusually severe case (it’s possible that they inherited a double dose from both parents — they’re still trying to locate the exact mutation that causes Type III/Hypermobility Type, and I suspect that they’re actually going to discover that it’s several similar subtypes, each with a separate familial mutation.) My brother wouldn’t have been, if we hadn’t gotten the diagnosis and then he admitted to having symptoms — but he was a sports star and a gymnast, because he got the extra flexibility without the tissue friability/fragility.

So, yes — women’s pain is often dismissed, and if a woman comes in with a cluster of disparate, apparently-unrelated symptoms, a doctor is more likely to treat her as a hypochondriac rather than look up the symptoms to realize that she is suffering from a syndrome with a variety of expressions.

i had a ‘lovely’ experience at planned parenthood once where a doctor suddenly shoved a not-very-lubed speculum in and i shed a tear because it hurt. i think i may’ve recently gotten the non-hormonal iud, i can’t remember, and i periodically have bad cramps outside of my period.

when he saw the tear, he asked if i was a victim of sexual abuse.

(i have never experienced pain during an exam before or since, and it was probably partly just due to shock… i’d never had a doctor do that suddenly vs. a relatively slow, narrated speech during a slow process)

My first gyno exam was performed on me when I was 18, by my mother’s male doctor, with a very large, cold, not-well-lubricated metal speculum. When I expressed (a great deal of) discomfort, the male doctor’s response was essentially to tell me to lie back and think of England.

Because I’d always had irregular cycles, when I was 22 I asked my GP if I could get on birth control to regulate my periods. He said “Yes, but you need to have an exam first.” Fortunately, the exam was performed by his female NP and her associate. I was shocked as hell when I described my difficulty with my first exam, and the NP looked at her associate (also female) and said “Give her the smallest plastic speculum we have, and use lots of lubricant.” In order, I think my internal responses were “They come in plastic?! They come in sizes?!”

It took me twenty years to find a gyno who took my concerns seriously. So seriously, in fact, that she recommended a hysterectomy almost immediately. I grinned, practically leapt off the table, and said “Take it, take it all, take it now! How soon can you do the surgery?” I had the surgery ten years ago, and I’ve been orders of magnitude happier as a result.

Oh, interesting! I have the exact same problem – “You shouldn’t be feeling anything by now!” “I told you about this – I am, and it hurts!” – but I had no idea that it had been studied and linked to genetic factors.

In the broader sense, yes, a thousand times. If you want the vastly more common version of this, look at pain management in women. I remain appalled by the number of doctors – including female ones – who still assume that any complaint from a female-bodied patient is attention-seeking or delicate femininity/the ladybrain’s not understanding what pain should feel like. (I know of more than one case where a woman presenting with a broken bone or nose was told that she shouldn’t need pain management. Gyah.)

I also once read a study that showed that if patients told their doctors that they were fully compliant with their medication schedules, the doctors were on average assuming that said patients missed their required medications about twice a week. Sadly, I don’t think that telling your doc you took a couple of extra sets of your morning tablets each week would correct the misapprehension… *snerk*

Had to leave a comment as one of those medical professionals. Unfortunately after you have practiced for about a year, you learn that people, in general, will lie to you to get anything they want, which in a lot of times is more potent pain medicine. I caught three lies this weekend and today (one each day). This was a slow weekend. And that’s not including all the calls I get every day about “when is my Xanax/Soma/Ambien/Hydrocodone due to be filled?” There’s about 8 to 10 of those calls per DAY.

So after you have dealt with the person going to Zimbabwe for 2 months who needs her pain medicine filled early AGAIN, and the person going to the airport RIGHT NOW and they need their pain med RIGHT NOW, and the person wanting to make sure that you have the four bar Xanax in stock and not the round ones because only the four-bars work for you (and incidentally sell for twice the price on the street) it is very easy to hear what a patient says, but not actually LISTEN to what the patients. Even if the request is for a non-pain/non-controlled product, there is still a part in the back of your mind going “well what do they want next?”

I can certainly understand your frustration, but there are a lot of other systemic problems that are contributing to your problem. I hope you can find a dentist who will listen to you.

It also sucks when I went to the emergency room in quite a bit of pain, and it was clear that the clinical staff thought I was doctor shopping. My husband, who wasn’t in pain, had the presence of mind to ask them to look up the refill history on the meds I got on an ACL replacement. (Hint: **0**)

It is just as frustrating as being treated like and idiot by tech support simply because 75% of their calls are from idiots.
I can understand being worried about pain pills shopping etc. but I get doctors questioning me on when I say my last menstrual period is. Yes I’m sure, I keep it written down for god’s sake. You want me to get out my calendar so you can look?

That is one problem I always feel like Oliver when I need a refill, nearly have to beg for a refill, tears in my eyes, ‘Please sir may I have some more?’ Drug seeekers royally screw up the world for those in chronic pain.

Thank you for sharing a medical professional side of story. I do empathize with your frustration and your very valid concerns regarding addiction and lies.

I do wonder, however, after reading the painful stories below, how many of these may have been perceived as lies by medical professionals?
Having said this, I recognize that these could be hard to tell apart, especially when doctors have to constantly deal with a lot of information, pressure, and little time. I recognize that these issues are systemic with no clear solutions. But talking about them, getting stories from all the sides and making sure they are all listened to, could be a start?

I can see that being an issue with narcotic pills, but how many drug seekers go to a dentist for novacaine/lidocaine? It doesn’t seem to be that there’s much recreational demand for injectable local anesthesia.

I’m very sorry that you’ve had to deal with that. People like that make life absolute hell for *real* pain patients.

It’s a huge challenge to be believed — even if you have a documented history of having tried *everything* other than opiates, you’re still treated like a criminal.

My neurologist couldn’t prescribe opiates, because her (large) practice had decided that they didn’t want to deal with REMS paperwork and possible liability. So, after I spent five-and-a-half years trying every potential trigeminal neuralgia treatment (I have Type 2 TN secondary to EDS, and have been turned down by three neurosurgeons because I’m too high-risk), and failed out of them all, she had to refer me to a complete stranger for Pain Management treatment.

At my first appointment, I was seen by a Nurse-Practitioner. Despite having my file in front of her, despite having the referral from the neurologist which *specifically said* that I was being referred for medication management because we’d discovered that a dose of morphine in the ER (after an 8-day attack) actually *worked* when Toradol and Demerol didn’t . . .

. . . she insisted that if I couldn’t use a patch (allergic to medical adhesive, very thin skin due to EDS, and the result is that I get huge raw spots if I have tape or electrodes on me for too long — the skin blisters underneath and then comes off with the adhesive), and couldn’t have a spinal stimulator implanted (it’s contraindicated for EDS patients — we’re not supposed to have surgery unless it’s absolutely necessary, spinal stimulators need their battery replaced about every 5 years, and even if they’re removed, they leave metal leads in the face/neck, meaning that I could never have an MRI again — and between the issues with my spine and the fact that I have some dysplasia in my brain tissue, and my Dad died of brain cancer, they NEED to be able to monitor me by MRI), I — and I quote — “must not be in that much pain.”

My partner and daughter were there with me, and they had never seen such hostile, dismissive treatment from a medical professional. I was treated like a liar, she refused to call my neurologist for a consult, and she acted like my *documented genetic disorder* was some kind of an “excuse” to get out of surgery. (As noted, I’d already seen three neurosurgeons, and if a spinal stimulator had been medically appropriate, I’d have one by now!)

I left crying. I don’t usually get emotional at the doctor, but this was my one hope for some actual relief, to get my quality of life back.

(Addicts tend to use medication to escape from life and treat psychological issues, all *I* want to do is to be able to spend time with my family and friends, to be a productive person who can give something back to the world, and not to be non-functional for 20 days a month.)

Thankfully, I was referred to a specific pain management doctor by another patient with EDS — she’d educated him about the disease, so there wasn’t the automatic disbelief and disparagement from people who are ignorant about the condition. He took one look at my file, said a spinal stimulator was obviously off the table, and I wound up on low-dose (5mg) oxymorphone.

Have been taking it (as infrequently as possible, it wrecks my GI system) for a year and a half, never fill early, don’t use it every day, am not habituated, and have never raised the dosage (in fact, I told him that he might as well prescribe 20 rather than 30, since I don’t use all of them in a month . . . but, because of scheduling issues, he wanted to be sure that I didn’t run out between appointments, which was fair.

I had to spend five-and-a-half years to get there, though, with one of the most painful known neurological conditions, on top of a disease that has caused considerable harm to my body. And yet, when I walked in the door, I was treated like a drug-seeker by the person my doctor had referred me to *in order to get a prescription.*

(BTW, I know that TN isn’t usually treated with opiates — Type 1 is much more responsive to anticonvulsants/antidepressants; Type 2, which is constant drilling/boring pain, responds less well to the existing surgeries and drugs used for Type 1 TN. Some people with Type 2 do respond to opiates, which is why my neuro wanted to try it. It was a last resort, after trying *everything* else — I referred to those years as the “medication-go-round.”)

So — while I’m sure you DO encounter patients who lie, please keep in mind that they are making it so much harder for patients who are telling the truth to get proper treatment.

Look at a patient’s history before making a snap judgment — and (if I read your other comment correctly, you’re a pharmacist) feel free to check in with their doctors if there is cause for suspicion . . . but don’t make the automatic assumption that a patient who requires pain medication or sedative medication is a drug-seeker unless proven otherwise.

Had to leave a comment as one of those medical professionals. Unfortunately after you have practiced for about a year, you learn that people, in general, will lie to you to get anything they want, which in a lot of times is more potent pain medicine. I caught three lies this weekend and today (one each day). This was a slow weekend. And that’s not including all the calls I get every day about “when is my Xanax/Soma/Ambien/Hydrocodone due to be filled?” There’s about 8 to 10 of those calls per DAY.

So after you have dealt with the person going to Zimbabwe for 2 months who needs her pain medicine filled early AGAIN, and the person going to the airport RIGHT NOW and they need their pain med RIGHT NOW, and the person wanting to make sure that you have the four bar Xanax in stock and not the round ones because only the four-bars work for you (and incidentally sell for twice the price on the street) it is very easy to hear what a patient says, but not actually LISTEN to what the patients. Even if the request is for a non-pain/non-controlled product, there is still a part in the back of your mind going “well what do they want next?”

I can certainly understand your frustration, but there are a lot of other systemic problems that are contributing to your problem. I hope you can find a dentist who will listen to you.

Having a few friends with abnormal reactions to pain meds, my first guess is that the dentist thinks you’re angling for opiates or other strong addictive medications. Even when it’s already in their charts, they generally have to go through the “No, still not working, pain is in the 8-10 range” each time they’re hospitalized.

That’s not the world’s newest study, but it’s written in accessible language, and the results have been duplicated over the years. There does seem to be a genetic susceptibility to addictive behavior, but I’ve seen studies that show only 2% of people given opiates for severe pain are going to become addicted.

(If they’re on a daily dose, they will become *habituated*, just like an antidepressant or a drug like Lyrica, you can’t discontinue it cold-turkey without causing withdrawal, but habituation and the need for step-down doesn’t mean that the patient is an addict, merely that they shouldn’t stop their meds abruptly.)

Some studies have shown that when doctors prescribe high doses of opioids after an injury or surgery, but then “cut the patient off” and expect them to stop cold-turkey, they can actually *create* addicts — because the patient goes into withdrawal, becomes desperate to relieve the symptoms, and may illicitly acquire opiates to deal with their symptoms, producing a craving for drugs and creating drug-seeking behavior. If the doctor had simply stepped-down the dosage gradually, the patient would have a longer but less severe withdrawal period, and the symptoms wouldn’t be anywhere near as bad.

It’s recommended that doctors step-down patients on opiates, but I’ve seen story after story of people who became addicted after a traumatic injury, because of this practice in particular. (Again, addiction is very rare, when opiates are being prescribed *to that patient* for a legitimate medical reason — most addicts are taking someone else’s prescription. Overdose death statistics bear this out — 60% of opiate-overdose deaths are from people who haven’t had a prescription for opiates in the past 6 months.)

So, yeah — lidocaine insensitivity, and asking for an alternate local anesthetic, does not constitute drug-seeking behavior (it’s not like you can get high off of Marcaine or Septocaine!)

BTW, your friends should get Cytochrome P450 genetic testing done, if they have access to a geneticist — CP450 can affect drug uptake dramatically, and if they’re shown to be . . . IIRC, the term is close to “super-processors” (whose bodies process pain medication much more rapidly than normal, so that their analgesic effect wears off sooner), their doctors may change their meds accordingly. It’s good to document this stuff, because you WILL be treated like a drug-seeker if you’re post-surgery and asking for more IV pain meds before they’re due.

I know I’ve seen an overall 60% figure published (rather than just data from 3 states), but I can’t devote more time to this right now. My point was that denying actual pain patients medication doesn’t keep drugs out of the hands of addicts, and that pain patients aren’t the ones causing the “epidemic” of overdoses.

Having a few friends with abnormal reactions to pain meds, my first guess is that the dentist thinks you’re angling for opiates or other strong addictive medications. Even when it’s already in their charts, they generally have to go through the “No, still not working, pain is in the 8-10 range” each time they’re hospitalized.

You’re probably lidocaine-insensitive because of a different mutation — redheads and blondes with light eyes, fair skin, and a history of Irish or Scandinavian descent are at elevated risk for lidocaine insensitivity. My former metamour is a redhead with blue eyes, and has the same issue (she’s not completely insensitive, but she’s very resistant.) As far as my doctors have been able to determine, I’m completely insensitive (heh, I hear that all the time! /smartass), and you can keep giving me shots forever, and it’s not going to take.)

I was told repeatedly by doctors when I was younger (through my late 20’s) that I should “quit complaining” and I obviously “couldn’t feel anything” because they’d given me a “double dose of lidocaine” for various local-anesthetic surgeries. I was told that I had a “low pain threshold.”

My “low pain threshold” actually turned out to be, as another doctor described, “hardcore” — because I’d had all those surgical procedures without ANY numbing or pain relief.

I wish that just one of those doctors had said “Hmm, if you’re still feeling everything with the lidocaine and can DESCRIBE WHAT I’M DOING TO YOU WITH YOUR EYES CLOSED, maybe the anesthetic isn’t working and we should try something else.”

Turns out that we can use some other members of the -caine family just fine — Marcaine, Carbocaine, etc. Now that we know this, we always tell doctors in advance — but I almost had to physically remove the hand of a doctor who was about to do a thyroid biopsy on my daughter (and who was verbally professing that there was no such thing as lidocaine insensitivity), because he was holding a great big needle up to her neck, and there was no way I was going to let him do that with no pain relief.

Doctors who listen, and doctors who are educated about EDS, and/or lidocaine insensitivity in general, are worth more than rubies. It’s very frustrating that so few doctors genuinely listen to their patients, rather than filling in a pre-determined narrative and ignoring our actual words if they don’t match up with the preconception.

And don’t even get me started on the current War on Pain Patients (er, “War on Drugs,” although the end result is the same.) The pendulum has swung from “Pill mills! OxyContin for everyone!” to a level of anti-opioid hysteria that has led to — JUST IN MY CIRCLE OF FRIENDS, IN THE PAST TWO MONTHS:

[1] A patient with a six-inch liver tumor being incorrectly red-flagged by a pharmacist as drug-seeking (which automatically put her on a tri-state database), because the pharmacist decided that she MUST be “drug-seeking,” because she’d received two previous (small/temporary) pain-medication prescriptions from doctors in two states. (Of course, they couldn’t just call the prescribing doctor and ask if he was aware that the patient had been seen at Johns Hopkins and Georgetown . . . that would be *too logical.*) Of course, she MUST be drug-seeking, because who ever goes to two major teaching hospitals in order to get second opinions on life-threatening liver surgery, right?

It took her fourteen days and eleven pharmacies in multiple chains before she could fill the prescription (once she was supposedly un-red-flagged, the pharmacies kept telling her that they didn’t have the right dosage/quantity of medication in stock, but they couldn’t tell her over the phone, she had to come in person to show the prescription and ask if they had the medication (I suppose the reasoning is to keep them from being held up at gunpoint for having a large supply of painkillers . . . but, seriously, is the answer to ask a seriously ill patient with a *tumor that is palpable from the outside* to drive around from pharmacy to pharmacy until she could get her prescription filled? All the while in agonizing pain? FFS.)

The only reason she wasn’t in the hospital, getting pain meds via IV, is that she has to lose as much weight as possible before the surgery, because it will improve her chances of survival (they have to remove about half of her liver.) So, the surgery is in two months, but in the meanwhile, she’s on a liquid diet, and she’s in a LOT of pain.

[2] A dear friend’s mother has cancer, and is going to be undergoing chemotherapy and radiation soon, but they have to build her strength back up first (she came very close to death after a post-biopsy infection.) When she was transferred from Intensive Care to a skilled nursing facility, they forgot to send her pain meds with her. When they arrived at the facility, her family was told that they were unable to provide the medication. A family member had to drive back to the hospital, only to be given a script rather than the actual meds — and, at that point, all the local pharmacies were closed.

This caused an elderly, medically-fragile woman to have to go overnight without her pain medication, when they’d been giving her IV morphine in the hospital. It was an ugly and needlessly-painful night for her, particularly since THE HOSPITAL ACKNOWLEDGED ITS ERROR, both to the family and the skilled nursing facility, but said that they could only give out a prescription rather than provide the medication directly.

[3] On August 18, the FDA made Tramadol a Schedule IV controlled substance. It’s a fairly low-grade pain medication, a synthetic opioid. The FDA acknowledges that abuse risk is fairly low.

My daughter went back to college on August 26. Normally, the doctor at the health center reviews her prescriptions and writes them so that they can be filled locally (some prescriptions can’t be transferred interstate — in her case, Lunesta had been the prescription that needed to be written for the local pharmacy.) This time, she got a different doctor (there had been a staff change), who refused to fill her Tramadol. When I called to *cough* discuss this with her, she said that she “didn’t feel comfortable” writing a prescription for an opioid analgesic for a 21-year-old, even though Kira has been taking that medication for about three years now, with no change in dosage. She said “I just don’t like to do this for a college student.”

I had to explain to her that (a) her fucking job is not to override my daughter’s specialists, (b) that she was welcome to CONSULT with those specialists, but that the expected end result would be that she WILL write that prescription, since Kira’s doctors can’t send it in from out of state, and (c) that being a college student was not a reason to deny appropriate analgesic medication for someone with an *exceptionally well-documented* painful medical condition. (I also said that Kira was about the least likely person to use meds recreationally *ever* — she doesn’t drink, she doesn’t use drugs, and she doesn’t “party.” All she wants is to be able to function on a day-to-day basis, and she wouldn’t risk her access to treatment by fucking around with her meds.)

As of today, that prescription is still not filled. (I need to light a fire under that doctor — I had Kira’s cardiologist and GP forward her records and their notes, and I need to follow up to make sure that the health center doctor has actually sent the damn prescriptions in.)

This is FUCKED UP.

(Damn, I wasn’t going to go on a rant about this, but . . . seriously, this is incredibly unacceptable.)

* * * Data which may prove useful to you in future * * *

Kira and I maintain a database of local anesthetics that we’ve had tried on us, and their effects. So far, the results seem to be similar for other people with lidocaine insensitivity, so I hope this will be useful for you. Might not be a bad thing to keep on a card in your wallet, in case of an emergency.

Good results:

Bupivacaine (Marcaine), Mepivacaine (Carbocaine).

Benzocaine and Articaine (Septocaine) have worked for dental procedures.

Marcaine is currently my anesthetic of choice, because it’s worked every time, and hospitals have generally had it on hand. Kira had her bone marrow biopsy done with a combination of Marcaine and Carbocaine.

Possible results:

Procaine (Novocaine) and Ropivacaine (Naropin) are two that are a maybe — it’s been too long to be sure about my one Novocaine dental procedure, and while I think that Ropivacaine was helpful during my nerve blocks, it’s short-acting, and seemed to not be 100% effective even during the first couple of hours.

Negative results:

Lidocaine, prilocaine, tetracaine — no effect, useless.

* * *

I’m sorry that you’ve had to go through this experience repeatedly — trust me, you are NOT alone!! — and I hope that this proves helpful to you in future.

Sorry about all those problems with pain meds. It is just as bad in the pharmacy–the DEA is actively shutting pharmacies down if we cannot prove that we make every effort to make sure the pain med is written for a medically valid condition and dosage. Yes it is in the pharmacy laws that we determine that (it is called good faith-we believe in good faith that the prescription was written by a doctor for a medically valid reason). the chain i work for requires us to keep copies of all rx’s denied for good faith reasons with documentation, and on certain medications we have to check the state database before we dispense as well as keeping a copy of a valid ID. I have a lot more paperwork now then when i started working.

I really do sympathize with pharmacists — they’re caught between a rock and a hard place.

I absolutely agree that problematic prescribing practices should be noted, that if a doctor has a pattern of suspicious high-dose drugs that can be abused, they should be investigated (although the studies that show 20% of doctors prescribing disproportionate amounts of opioids doesn’t separate pain-management doctors out from other types — their practices are likely to see sicker patients and patients who have not responded to other treatment regimens.)

You may find my comment on this article (Andrea S, September 9) to be illuminating:

(Surprise, surprise — physician who is the VP of a drug-testing company calls for more drug testing.)

I understand that you do run into issues of *real* drug-seeking behavior, and I wish that there were more accessible treatment options for people who are living with addiction (it’s very difficult to get into rehab if you haven’t gone through the legal system first, or have independent/family wealth.)

I am not downplaying the fact that we have a prescription drug abuse problem in the US. But we also have under-treatment of pain, particularly for low-income patients, and we have few resources for people who have developed an addiction and need to be treated for it — addiction is a medical problem, not a moral failing.

FWIW, as noted in a comment above, some physicians set the stage for addiction by prescribing high doses of post-surgery/post-injury opiates, and then abruptly cut the patient off after a month, without a step-down procedure.

I think that physician education about step-down, and universal adoption of a step-down procedure from all drugs that cause withdrawal symptoms, not just opiates, would create far fewer drug abusers.

A number of addicts report developing their addiction while going through withdrawal from prescribed meds, while the majority are using drugs obtained through diversion or theft. The pain patients themselves are usually not the target population for addiction prevention.

I understand that sometimes you need to make a good-faith denial because you have reasonable suspicions that the patient is doctor-shopping or abusing medications. However, before the patient gets red-flagged in the state database and is suddenly denied access to all pain medication (as with the liver-tumor patient), there needs to be a good-faith effort to contact their physician/s, to make sure that the red-flagging isn’t a mistake.

FWIW, the one time I ran into a possible overdose situation, it was due to lack of instruction from medical professionals, not medication misuse — I knew that you shouldn’t combine benzodiazepines with opiates, but I had mistakenly been under the impression that benzos were only drugs like Diazepam or Halcion, not Xanax.

(I always look up any potential drug interactions on Drugs.com, as well as listening to my doctors and reading the labels, but for some reason, Drugs.com didn’t red-flag the oxymorphone/alprazolam interaction. Respiratory depression was listed under “disease interactions,” rather than “drug interactions.”)

I found this out by accident when I almost died in my sleep — I rarely take Xanax, but I have the prescription due to severe insomnia/anxiety that sometimes makes it very difficult to sleep. I was having a trigeminal neuralgia flare and a migraine, so I took my prescribed meds (sumatriptan injection, Sprix/ketoralac nasal spray, 5mg oxymorphone), and after lying in bed for an hour, unable to sleep because of pain, I took a Xanax.

And then, some time later, kept waking up because I kept stopping breathing in my sleep. I was too out-of-it to actually call for help (it didn’t occur to me), but I managed to fumble with my phone until I found “xanax oxymorphone respiratory depression” and wrote an incoherent NOTE saying what was happening, and then managed to roll over on my side to try to keep my airway clear.

When I reported this to my doctor and pharmacist, both said “Oh, we thought you knew that, you’re always such an educated patient.” And yet, even with responsible use and *doing my best to check for known interactions*, that one got missed, and nearly killed me.

I really wonder how many opiate deaths are due to similar ignorance, and failure of doctors and pharmacists to inform patients of potentially lethal interactions — I was genuinely shocked that they didn’t say anything, because I am *vigilant* about making sure that my specialists have the most up-to-date info on my meds — and the alprazolam prescription had been in place for years, whereas the oxymorphone was new at the time.

Wishing you luck in making these difficult decisions and dealing with all of the additional paperwork — I’m just not convinced that the current deterrent efforts are actually stopping diversion, as opposed to creating barriers for genuine pain patients to get adequate analgesia.

It’s 1/10 the strength of morphine, but it is an opioid. Very few people would choose to abuse it — the level of pain relief or potential slight euphoria is outweighed by the fact that, to take an amount to actually get “high,” you’d normally be dealing with severe nausea and vomiting. (I have to take Zofran at the same time, when using a fairly low dose as medically-appropriate, or it makes me really sick.)

I think it absolutely should be prescription-only, because of the potential for side effects with so many other meds . . . but saying that I think that certain meds should only be given by a doctor who is aware of any of their patient’s other meds doesn’t mean that I think the drug should be scheduled.

It’s often the only relief many low-income people in pain get — it’s a $4 generic prescription at WalMart, or was, before the scheduling. Probably more. (Many supposed “pain clinics” only prescribe tramadol for pain, and rely on “trigger point injections,” which can be harmful in their own right, for a source of regular income.)

So — is it technically “addictive”? It causes withdrawal — but that’s drug habituation, not drug addiction. (Like many antidepressants, or drugs like Lyrica or Prednisone, you shouldn’t stop tramadol cold-turkey, or you will go into withdrawal. That is *not* the same as drug addiction — if you’re taking the medication as prescribed, habituation is expected. Any responsible doctor who was taking a patient *off* daily tramadol would arrange for a step-down period, rather than stopping abruptly.) Tramadol does have a longer withdrawal period than some other drugs, so it’s important that step-down be done under medical supervision.

Drug *addiction* is a *behavior* and a type of *brain dysfunction*, considered to be both a mental and physical illness by most authorities.

Addictive behaviors often don’t discriminate between drugs (i.e., someone who is abusing heroin would likely abuse tramadol, but they’d also likely abuse alcohol and anything else they can get their hands on.) That doesn’t make tramadol a drug with a huge abuse/addiction potential.

Addiction is a chronic, often relapsing brain disease that causes compulsive drug seeking and use, despite harmful consequences to the addicted individual and to those around him or her. Although the initial decision to take drugs is voluntary for most people, the brain changes that occur over time challenge an addicted person’s self control and hamper his or her ability to resist intense impulses to take drugs. (Source: Drugabuse.gov)

So — agreed, almost entirely, although I do think it’s important to note the habituation/withdrawal issue, which many people mistake for “addiction.”

A lot of people think that if you go through withdrawal when discontinuing a medication or missing a dose, that makes you an “addict” — which is very untrue. Physical habituation simply means that you are using a medication frequently enough that your body reacts when the medication is removed — it’s totally different from addiction.

And my daughter still doesn’t have her meds, because the doctors who were supposed to be sending records . . . didn’t.

redheads and blondes with light eyes, fair skin, and a history of Irish or Scandinavian descent are at elevated risk for lidocaine insensitivity.

Well, that explains it. My last dentist (too many years ago) refused to remove two wisdom teeth because when he took out the first two he gave me as many shots he was comfortable giving, and I was still reacting to the pain more than he was comfortable with. He wanted me to go to an oral surgeon capable of knocking me out because *caine wasn’t going to cut it.

It turns out I have a high pain threshhold — a potentially life-threateningly high pain threshhold. It took me 3 days to seek treatment for the dull ache in my abdomen that turned out to be appendicitis (that tore during removal), and I realized that I was having shock symptoms (cold, clammy sweats, shakes, etc) while in the ER for kidney stones, but at no time in either case would I have given a pain score above 7-8.

*nods* Understanding and sympathy coming your way — I also have a terrifyingly high pain tolerance, and have missed important symptoms because they get drowned out by the pain I’m used to dealing with.

I tough my way through a lot of things without any kind of medication, so when I actually go to the doctor to report pain, it’s something serious enough that it does require some kind of intervention.

It sounds like you’d either do better with a Benzocaine/Articaine (Articaine is also known as Septocaine when it’s combined with epinephrine) combination for dental work (this does really well for me, FWIW), or you need to be under twilight sedation. Thankfully, many dentists are switching from Novocaine to Septocaine these days — that way, they can treat the non-responders as well as people with a normal reaction to the -caine family.

(And, yeah — I’ve had to explain to doctors that a 5 on my pain scale is equivalent to the average person’s 7, and if I report that I’m at 8 or above, it would be an average 10. Trigeminal neuralgia is one of the more painful conditions known to medicine, and Ehlers-Danlos, which my TN is secondary to, has a range of systemic symptoms that create a high level of daily pain. Most of the time, I just grit my teeth and keep going, because the pain meds have side effects that I want to avoid if at all possible.)

My pain threshhold has always been incredibly high. I was born with hydrocephalus, which is a brain disorder that can be fatal if it isn’t treated–usually with a surgical drainage tube called a shunt, or with a different procedure called an ETV. I had my first shunt put in when I was three weeks old (I’m almost 43 now); I’ve had a total of 17 surgeries.

In my teens I was diagnosed with Chronic Fatigue Syndrome, a diagnosis which was ultimately modified to fibromyalgia about fifteen years ago.

I hurt my foot last year, severely enough that I needed a “walking boot.” When the nurse asked if I wanted a script for pain meds, I shocked the hell out of her by turning her down. I said “Here’s the problem. Pain medications make me stoned out of my gourd, but they do nothing to stop the pain. So I can either be stoned out of my gourd, and still in pain, or completely aware of my surroundings, and still in pain. I’d rather keep my faculties, thanks.”

TL;DR: My pain threshhold is about like yours. When a doctor asks me to “describe my pain on a scale of 1-10,” I have to remind them that I’m hydrocephalic and I have fibromyalgia. The “normal” pain I live with every day is around 5-7. Hurting my foot was maybe 7-8. Full-blown shunt failure, where I’ve passed out from the pain, is easily a 12, if not worse.

You’re probably lidocaine-insensitive because of a different mutation — redheads and blondes with light eyes, fair skin, and a history of Irish or Scandinavian descent are at elevated risk for lidocaine insensitivity. My former metamour is a redhead with blue eyes, and has the same issue (she’s not completely insensitive, but she’s very resistant.) As far as my doctors have been able to determine, I’m completely insensitive (heh, I hear that all the time! /smartass), and you can keep giving me shots forever, and it’s not going to take.)

I was told repeatedly by doctors when I was younger (through my late 20’s) that I should “quit complaining” and I obviously “couldn’t feel anything” because they’d given me a “double dose of lidocaine” for various local-anesthetic surgeries. I was told that I had a “low pain threshold.”

My “low pain threshold” actually turned out to be, as another doctor described, “hardcore” — because I’d had all those surgical procedures without ANY numbing or pain relief.

I wish that just one of those doctors had said “Hmm, if you’re still feeling everything with the lidocaine and can DESCRIBE WHAT I’M DOING TO YOU WITH YOUR EYES CLOSED, maybe the anesthetic isn’t working and we should try something else.”

Turns out that we can use some other members of the -caine family just fine — Marcaine, Carbocaine, etc. Now that we know this, we always tell doctors in advance — but I almost had to physically remove the hand of a doctor who was about to do a thyroid biopsy on my daughter (and who was verbally professing that there was no such thing as lidocaine insensitivity), because he was holding a great big needle up to her neck, and there was no way I was going to let him do that with no pain relief.

Doctors who listen, and doctors who are educated about EDS, and/or lidocaine insensitivity in general, are worth more than rubies. It’s very frustrating that so few doctors genuinely listen to their patients, rather than filling in a pre-determined narrative and ignoring our actual words if they don’t match up with the preconception.

And don’t even get me started on the current War on Pain Patients (er, “War on Drugs,” although the end result is the same.) The pendulum has swung from “Pill mills! OxyContin for everyone!” to a level of anti-opioid hysteria that has led to — JUST IN MY CIRCLE OF FRIENDS, IN THE PAST TWO MONTHS:

[1] A patient with a six-inch liver tumor being incorrectly red-flagged by a pharmacist as drug-seeking (which automatically put her on a tri-state database), because the pharmacist decided that she MUST be “drug-seeking,” because she’d received two previous (small/temporary) pain-medication prescriptions from doctors in two states. (Of course, they couldn’t just call the prescribing doctor and ask if he was aware that the patient had been seen at Johns Hopkins and Georgetown . . . that would be *too logical.*) Of course, she MUST be drug-seeking, because who ever goes to two major teaching hospitals in order to get second opinions on life-threatening liver surgery, right?

It took her fourteen days and eleven pharmacies in multiple chains before she could fill the prescription (once she was supposedly un-red-flagged, the pharmacies kept telling her that they didn’t have the right dosage/quantity of medication in stock, but they couldn’t tell her over the phone, she had to come in person to show the prescription and ask if they had the medication (I suppose the reasoning is to keep them from being held up at gunpoint for having a large supply of painkillers . . . but, seriously, is the answer to ask a seriously ill patient with a *tumor that is palpable from the outside* to drive around from pharmacy to pharmacy until she could get her prescription filled? All the while in agonizing pain? FFS.)

The only reason she wasn’t in the hospital, getting pain meds via IV, is that she has to lose as much weight as possible before the surgery, because it will improve her chances of survival (they have to remove about half of her liver.) So, the surgery is in two months, but in the meanwhile, she’s on a liquid diet, and she’s in a LOT of pain.

[2] A dear friend’s mother has cancer, and is going to be undergoing chemotherapy and radiation soon, but they have to build her strength back up first (she came very close to death after a post-biopsy infection.) When she was transferred from Intensive Care to a skilled nursing facility, they forgot to send her pain meds with her. When they arrived at the facility, her family was told that they were unable to provide the medication. A family member had to drive back to the hospital, only to be given a script rather than the actual meds — and, at that point, all the local pharmacies were closed.

This caused an elderly, medically-fragile woman to have to go overnight without her pain medication, when they’d been giving her IV morphine in the hospital. It was an ugly and needlessly-painful night for her, particularly since THE HOSPITAL ACKNOWLEDGED ITS ERROR, both to the family and the skilled nursing facility, but said that they could only give out a prescription rather than provide the medication directly.

[3] On August 18, the FDA made Tramadol a Schedule IV controlled substance. It’s a fairly low-grade pain medication, a synthetic opioid. The FDA acknowledges that abuse risk is fairly low.

My daughter went back to college on August 26. Normally, the doctor at the health center reviews her prescriptions and writes them so that they can be filled locally (some prescriptions can’t be transferred interstate — in her case, Lunesta had been the prescription that needed to be written for the local pharmacy.) This time, she got a different doctor (there had been a staff change), who refused to fill her Tramadol. When I called to *cough* discuss this with her, she said that she “didn’t feel comfortable” writing a prescription for an opioid analgesic for a 21-year-old, even though Kira has been taking that medication for about three years now, with no change in dosage. She said “I just don’t like to do this for a college student.”

I had to explain to her that (a) her fucking job is not to override my daughter’s specialists, (b) that she was welcome to CONSULT with those specialists, but that the expected end result would be that she WILL write that prescription, since Kira’s doctors can’t send it in from out of state, and (c) that being a college student was not a reason to deny appropriate analgesic medication for someone with an *exceptionally well-documented* painful medical condition. (I also said that Kira was about the least likely person to use meds recreationally *ever* — she doesn’t drink, she doesn’t use drugs, and she doesn’t “party.” All she wants is to be able to function on a day-to-day basis, and she wouldn’t risk her access to treatment by fucking around with her meds.)

As of today, that prescription is still not filled. (I need to light a fire under that doctor — I had Kira’s cardiologist and GP forward her records and their notes, and I need to follow up to make sure that the health center doctor has actually sent the damn prescriptions in.)

This is FUCKED UP.

(Damn, I wasn’t going to go on a rant about this, but . . . seriously, this is incredibly unacceptable.)

* * * Data which may prove useful to you in future * * *

Kira and I maintain a database of local anesthetics that we’ve had tried on us, and their effects. So far, the results seem to be similar for other people with lidocaine insensitivity, so I hope this will be useful for you. Might not be a bad thing to keep on a card in your wallet, in case of an emergency.

Good results:

Bupivacaine (Marcaine), Mepivacaine (Carbocaine).

Benzocaine and Articaine (Septocaine) have worked for dental procedures.

Marcaine is currently my anesthetic of choice, because it’s worked every time, and hospitals have generally had it on hand. Kira had her bone marrow biopsy done with a combination of Marcaine and Carbocaine.

Possible results:

Procaine (Novocaine) and Ropivacaine (Naropin) are two that are a maybe — it’s been too long to be sure about my one Novocaine dental procedure, and while I think that Ropivacaine was helpful during my nerve blocks, it’s short-acting, and seemed to not be 100% effective even during the first couple of hours.

Negative results:

Lidocaine, prilocaine, tetracaine — no effect, useless.

* * *

I’m sorry that you’ve had to go through this experience repeatedly — trust me, you are NOT alone!! — and I hope that this proves helpful to you in future.

Yep. Women, especially fat middle-aged women (*points at self*), are often undertreated for pain, or told that it’s “all in our heads,” when we have a physical problem that requires medical intervention.

You may be interested in this recent report — it’s less rigorous than a study, but it’s fairly staggering in its results — I’d love to see a full-on research team tackle the same questions, with a control group in order to get the most accurate findings.

It also sucks when I went to the emergency room in quite a bit of pain, and it was clear that the clinical staff thought I was doctor shopping. My husband, who wasn’t in pain, had the presence of mind to ask them to look up the refill history on the meds I got on an ACL replacement. (Hint: **0**)

It is just as frustrating as being treated like and idiot by tech support simply because 75% of their calls are from idiots.
I can understand being worried about pain pills shopping etc. but I get doctors questioning me on when I say my last menstrual period is. Yes I’m sure, I keep it written down for god’s sake. You want me to get out my calendar so you can look?

I have a pretty major lidocaine resistance too, It takes a lot to even start numbing and wears off quickly (including mid-procedures) and the dentists and hygienists never believe me. Always so certain they are right.

I even found this great office I’ve been going to for the past few years and they too didn’t believe me the first time, though they sorta believe me now (though they still underestimate the needed amounts). Nice people, very compassionate and thoughtful and yet the first few visits they had that resistance as well, so it isn’t even just the ones that don’t care, it definitely points toward a systemic issue in the industry.

Before your next dentist’s appointment, ask them to please make sure to get Articaine (also called Septocaine, which is Articaine + Epinephrine, to reduce bleeding) in stock.

My daughter and I are lidocaine-insensitive, and we’ve had good dental results with Benzocaine cream for local numbing (before the shots), and Articaine shots for the actual procedures.

It’s not an unusual medication to ask for — many dentists have switched to Septocaine over Novocaine, because it’s more effective in a larger number of patients — so you hopefully shouldn’t get a hard time from them.

It’s possible that we have a different sodium-channel mutation than you do, but it’s certainly worth a try — and could save you a lot of pain.

I have a pretty major lidocaine resistance too, It takes a lot to even start numbing and wears off quickly (including mid-procedures) and the dentists and hygienists never believe me. Always so certain they are right.

I even found this great office I’ve been going to for the past few years and they too didn’t believe me the first time, though they sorta believe me now (though they still underestimate the needed amounts). Nice people, very compassionate and thoughtful and yet the first few visits they had that resistance as well, so it isn’t even just the ones that don’t care, it definitely points toward a systemic issue in the industry.

That is one problem I always feel like Oliver when I need a refill, nearly have to beg for a refill, tears in my eyes, ‘Please sir may I have some more?’ Drug seeekers royally screw up the world for those in chronic pain.

Thank you for sharing a medical professional side of story. I do empathize with your frustration and your very valid concerns regarding addiction and lies.

I do wonder, however, after reading the painful stories below, how many of these may have been perceived as lies by medical professionals?
Having said this, I recognize that these could be hard to tell apart, especially when doctors have to constantly deal with a lot of information, pressure, and little time. I recognize that these issues are systemic with no clear solutions. But talking about them, getting stories from all the sides and making sure they are all listened to, could be a start?

I can see that being an issue with narcotic pills, but how many drug seekers go to a dentist for novacaine/lidocaine? It doesn’t seem to be that there’s much recreational demand for injectable local anesthesia.

redheads and blondes with light eyes, fair skin, and a history of Irish or Scandinavian descent are at elevated risk for lidocaine insensitivity.

Well, that explains it. My last dentist (too many years ago) refused to remove two wisdom teeth because when he took out the first two he gave me as many shots he was comfortable giving, and I was still reacting to the pain more than he was comfortable with. He wanted me to go to an oral surgeon capable of knocking me out because *caine wasn’t going to cut it.

It turns out I have a high pain threshhold — a potentially life-threateningly high pain threshhold. It took me 3 days to seek treatment for the dull ache in my abdomen that turned out to be appendicitis (that tore during removal), and I realized that I was having shock symptoms (cold, clammy sweats, shakes, etc) while in the ER for kidney stones, but at no time in either case would I have given a pain score above 7-8.

Sorry about all those problems with pain meds. It is just as bad in the pharmacy–the DEA is actively shutting pharmacies down if we cannot prove that we make every effort to make sure the pain med is written for a medically valid condition and dosage. Yes it is in the pharmacy laws that we determine that (it is called good faith-we believe in good faith that the prescription was written by a doctor for a medically valid reason). the chain i work for requires us to keep copies of all rx’s denied for good faith reasons with documentation, and on certain medications we have to check the state database before we dispense as well as keeping a copy of a valid ID. I have a lot more paperwork now then when i started working.

Before your next dentist’s appointment, ask them to please make sure to get Articaine (also called Septocaine, which is Articaine + Epinephrine, to reduce bleeding) in stock.

My daughter and I are lidocaine-insensitive, and we’ve had good dental results with Benzocaine cream for local numbing (before the shots), and Articaine shots for the actual procedures.

It’s not an unusual medication to ask for — many dentists have switched to Septocaine over Novocaine, because it’s more effective in a larger number of patients — so you hopefully shouldn’t get a hard time from them.

It’s possible that we have a different sodium-channel mutation than you do, but it’s certainly worth a try — and could save you a lot of pain.

FYI, in my third long comment to this post (er, I may have a lot to say on the subject), I have a list of which local anesthetics *have* been effective on my daughter and I (we both have lidocaine insensitivity), and it may be helpful for you to ask for an alternative for future procedures.

For general surgical purposes, Marcaine is the most common and most effective. For dental, Benzocaine gel provides a degree of surface numbing, and Articaine/Septocaine shots are actually very effective and long-lasting.

And, yes — I have a lifetime’s experience of dealing with how doctors treat pain management in women, and it’s utterly infuriating and dispiriting.

(I have a good treatment team *now*, but that’s after a lot of trial and error — and I also have a *diagnosis* which doctors can understand, even though it’s a rare disorder and many doctors have never seen it before. Without the diagnosis, I’d almost certainly be treated as a hypochondriac, because I have systemic issues that result in a lot of different disease manifestations.)

Before I was diagnosed, I *was* treated suspiciously by doctors, even though I was stringently anti-opiates at the time.

And many people take 10+ years to get a correct diagnosis with this disease, so I’ve seen other people with Ehlers-Danlos treated BRUTALLY by health personnel who don’t understand the patient’s symptoms.

I have friends who have experienced things like doctors forcibly dislocating their hips to “prove” they don’t need a brace. Then, of course, the doctor decides they must have congenital hip dysplasia, rather than a connective-tissue disorder — even though the patient is telling them that they experience similar subluxations and dislocations in every OTHER joint in their body.

And it’s a disease that — surprise! — is about 80% female on its face. (It’s actually not a sex-linked mutation, but female hormones can have an enormous effect on its expression — my father and brother had relatively mild symptoms, whereas my grandmother, myself, and my daughter have severe symptoms. You usually develop new symptoms or get worse during puberty, pregnancy, and — oddly enough — menopause.)

Many men are never diagnosed, unless they have an unusually severe case (it’s possible that they inherited a double dose from both parents — they’re still trying to locate the exact mutation that causes Type III/Hypermobility Type, and I suspect that they’re actually going to discover that it’s several similar subtypes, each with a separate familial mutation.) My brother wouldn’t have been, if we hadn’t gotten the diagnosis and then he admitted to having symptoms — but he was a sports star and a gymnast, because he got the extra flexibility without the tissue friability/fragility.

So, yes — women’s pain is often dismissed, and if a woman comes in with a cluster of disparate, apparently-unrelated symptoms, a doctor is more likely to treat her as a hypochondriac rather than look up the symptoms to realize that she is suffering from a syndrome with a variety of expressions.

I’m very sorry that you’ve had to deal with that. People like that make life absolute hell for *real* pain patients.

It’s a huge challenge to be believed — even if you have a documented history of having tried *everything* other than opiates, you’re still treated like a criminal.

My neurologist couldn’t prescribe opiates, because her (large) practice had decided that they didn’t want to deal with REMS paperwork and possible liability. So, after I spent five-and-a-half years trying every potential trigeminal neuralgia treatment (I have Type 2 TN secondary to EDS, and have been turned down by three neurosurgeons because I’m too high-risk), and failed out of them all, she had to refer me to a complete stranger for Pain Management treatment.

At my first appointment, I was seen by a Nurse-Practitioner. Despite having my file in front of her, despite having the referral from the neurologist which *specifically said* that I was being referred for medication management because we’d discovered that a dose of morphine in the ER (after an 8-day attack) actually *worked* when Toradol and Demerol didn’t . . .

. . . she insisted that if I couldn’t use a patch (allergic to medical adhesive, very thin skin due to EDS, and the result is that I get huge raw spots if I have tape or electrodes on me for too long — the skin blisters underneath and then comes off with the adhesive), and couldn’t have a spinal stimulator implanted (it’s contraindicated for EDS patients — we’re not supposed to have surgery unless it’s absolutely necessary, spinal stimulators need their battery replaced about every 5 years, and even if they’re removed, they leave metal leads in the face/neck, meaning that I could never have an MRI again — and between the issues with my spine and the fact that I have some dysplasia in my brain tissue, and my Dad died of brain cancer, they NEED to be able to monitor me by MRI), I — and I quote — “must not be in that much pain.”

My partner and daughter were there with me, and they had never seen such hostile, dismissive treatment from a medical professional. I was treated like a liar, she refused to call my neurologist for a consult, and she acted like my *documented genetic disorder* was some kind of an “excuse” to get out of surgery. (As noted, I’d already seen three neurosurgeons, and if a spinal stimulator had been medically appropriate, I’d have one by now!)

I left crying. I don’t usually get emotional at the doctor, but this was my one hope for some actual relief, to get my quality of life back.

(Addicts tend to use medication to escape from life and treat psychological issues, all *I* want to do is to be able to spend time with my family and friends, to be a productive person who can give something back to the world, and not to be non-functional for 20 days a month.)

Thankfully, I was referred to a specific pain management doctor by another patient with EDS — she’d educated him about the disease, so there wasn’t the automatic disbelief and disparagement from people who are ignorant about the condition. He took one look at my file, said a spinal stimulator was obviously off the table, and I wound up on low-dose (5mg) oxymorphone.

Have been taking it (as infrequently as possible, it wrecks my GI system) for a year and a half, never fill early, don’t use it every day, am not habituated, and have never raised the dosage (in fact, I told him that he might as well prescribe 20 rather than 30, since I don’t use all of them in a month . . . but, because of scheduling issues, he wanted to be sure that I didn’t run out between appointments, which was fair.

I had to spend five-and-a-half years to get there, though, with one of the most painful known neurological conditions, on top of a disease that has caused considerable harm to my body. And yet, when I walked in the door, I was treated like a drug-seeker by the person my doctor had referred me to *in order to get a prescription.*

(BTW, I know that TN isn’t usually treated with opiates — Type 1 is much more responsive to anticonvulsants/antidepressants; Type 2, which is constant drilling/boring pain, responds less well to the existing surgeries and drugs used for Type 1 TN. Some people with Type 2 do respond to opiates, which is why my neuro wanted to try it. It was a last resort, after trying *everything* else — I referred to those years as the “medication-go-round.”)

So — while I’m sure you DO encounter patients who lie, please keep in mind that they are making it so much harder for patients who are telling the truth to get proper treatment.

Look at a patient’s history before making a snap judgment — and (if I read your other comment correctly, you’re a pharmacist) feel free to check in with their doctors if there is cause for suspicion . . . but don’t make the automatic assumption that a patient who requires pain medication or sedative medication is a drug-seeker unless proven otherwise.

That’s not the world’s newest study, but it’s written in accessible language, and the results have been duplicated over the years. There does seem to be a genetic susceptibility to addictive behavior, but I’ve seen studies that show only 2% of people given opiates for severe pain are going to become addicted.

(If they’re on a daily dose, they will become *habituated*, just like an antidepressant or a drug like Lyrica, you can’t discontinue it cold-turkey without causing withdrawal, but habituation and the need for step-down doesn’t mean that the patient is an addict, merely that they shouldn’t stop their meds abruptly.)

Some studies have shown that when doctors prescribe high doses of opioids after an injury or surgery, but then “cut the patient off” and expect them to stop cold-turkey, they can actually *create* addicts — because the patient goes into withdrawal, becomes desperate to relieve the symptoms, and may illicitly acquire opiates to deal with their symptoms, producing a craving for drugs and creating drug-seeking behavior. If the doctor had simply stepped-down the dosage gradually, the patient would have a longer but less severe withdrawal period, and the symptoms wouldn’t be anywhere near as bad.

It’s recommended that doctors step-down patients on opiates, but I’ve seen story after story of people who became addicted after a traumatic injury, because of this practice in particular. (Again, addiction is very rare, when opiates are being prescribed *to that patient* for a legitimate medical reason — most addicts are taking someone else’s prescription. Overdose death statistics bear this out — 60% of opiate-overdose deaths are from people who haven’t had a prescription for opiates in the past 6 months.)

So, yeah — lidocaine insensitivity, and asking for an alternate local anesthetic, does not constitute drug-seeking behavior (it’s not like you can get high off of Marcaine or Septocaine!)

BTW, your friends should get Cytochrome P450 genetic testing done, if they have access to a geneticist — CP450 can affect drug uptake dramatically, and if they’re shown to be . . . IIRC, the term is close to “super-processors” (whose bodies process pain medication much more rapidly than normal, so that their analgesic effect wears off sooner), their doctors may change their meds accordingly. It’s good to document this stuff, because you WILL be treated like a drug-seeker if you’re post-surgery and asking for more IV pain meds before they’re due.

I know I’ve seen an overall 60% figure published (rather than just data from 3 states), but I can’t devote more time to this right now. My point was that denying actual pain patients medication doesn’t keep drugs out of the hands of addicts, and that pain patients aren’t the ones causing the “epidemic” of overdoses.

I really do sympathize with pharmacists — they’re caught between a rock and a hard place.

I absolutely agree that problematic prescribing practices should be noted, that if a doctor has a pattern of suspicious high-dose drugs that can be abused, they should be investigated (although the studies that show 20% of doctors prescribing disproportionate amounts of opioids doesn’t separate pain-management doctors out from other types — their practices are likely to see sicker patients and patients who have not responded to other treatment regimens.)

You may find my comment on this article (Andrea S, September 9) to be illuminating:

(Surprise, surprise — physician who is the VP of a drug-testing company calls for more drug testing.)

I understand that you do run into issues of *real* drug-seeking behavior, and I wish that there were more accessible treatment options for people who are living with addiction (it’s very difficult to get into rehab if you haven’t gone through the legal system first, or have independent/family wealth.)

I am not downplaying the fact that we have a prescription drug abuse problem in the US. But we also have under-treatment of pain, particularly for low-income patients, and we have few resources for people who have developed an addiction and need to be treated for it — addiction is a medical problem, not a moral failing.

FWIW, as noted in a comment above, some physicians set the stage for addiction by prescribing high doses of post-surgery/post-injury opiates, and then abruptly cut the patient off after a month, without a step-down procedure.

I think that physician education about step-down, and universal adoption of a step-down procedure from all drugs that cause withdrawal symptoms, not just opiates, would create far fewer drug abusers.

A number of addicts report developing their addiction while going through withdrawal from prescribed meds, while the majority are using drugs obtained through diversion or theft. The pain patients themselves are usually not the target population for addiction prevention.

I understand that sometimes you need to make a good-faith denial because you have reasonable suspicions that the patient is doctor-shopping or abusing medications. However, before the patient gets red-flagged in the state database and is suddenly denied access to all pain medication (as with the liver-tumor patient), there needs to be a good-faith effort to contact their physician/s, to make sure that the red-flagging isn’t a mistake.

FWIW, the one time I ran into a possible overdose situation, it was due to lack of instruction from medical professionals, not medication misuse — I knew that you shouldn’t combine benzodiazepines with opiates, but I had mistakenly been under the impression that benzos were only drugs like Diazepam or Halcion, not Xanax.

(I always look up any potential drug interactions on Drugs.com, as well as listening to my doctors and reading the labels, but for some reason, Drugs.com didn’t red-flag the oxymorphone/alprazolam interaction. Respiratory depression was listed under “disease interactions,” rather than “drug interactions.”)

I found this out by accident when I almost died in my sleep — I rarely take Xanax, but I have the prescription due to severe insomnia/anxiety that sometimes makes it very difficult to sleep. I was having a trigeminal neuralgia flare and a migraine, so I took my prescribed meds (sumatriptan injection, Sprix/ketoralac nasal spray, 5mg oxymorphone), and after lying in bed for an hour, unable to sleep because of pain, I took a Xanax.

And then, some time later, kept waking up because I kept stopping breathing in my sleep. I was too out-of-it to actually call for help (it didn’t occur to me), but I managed to fumble with my phone until I found “xanax oxymorphone respiratory depression” and wrote an incoherent NOTE saying what was happening, and then managed to roll over on my side to try to keep my airway clear.

When I reported this to my doctor and pharmacist, both said “Oh, we thought you knew that, you’re always such an educated patient.” And yet, even with responsible use and *doing my best to check for known interactions*, that one got missed, and nearly killed me.

I really wonder how many opiate deaths are due to similar ignorance, and failure of doctors and pharmacists to inform patients of potentially lethal interactions — I was genuinely shocked that they didn’t say anything, because I am *vigilant* about making sure that my specialists have the most up-to-date info on my meds — and the alprazolam prescription had been in place for years, whereas the oxymorphone was new at the time.

Wishing you luck in making these difficult decisions and dealing with all of the additional paperwork — I’m just not convinced that the current deterrent efforts are actually stopping diversion, as opposed to creating barriers for genuine pain patients to get adequate analgesia.

*nods* Understanding and sympathy coming your way — I also have a terrifyingly high pain tolerance, and have missed important symptoms because they get drowned out by the pain I’m used to dealing with.

I tough my way through a lot of things without any kind of medication, so when I actually go to the doctor to report pain, it’s something serious enough that it does require some kind of intervention.

It sounds like you’d either do better with a Benzocaine/Articaine (Articaine is also known as Septocaine when it’s combined with epinephrine) combination for dental work (this does really well for me, FWIW), or you need to be under twilight sedation. Thankfully, many dentists are switching from Novocaine to Septocaine these days — that way, they can treat the non-responders as well as people with a normal reaction to the -caine family.

(And, yeah — I’ve had to explain to doctors that a 5 on my pain scale is equivalent to the average person’s 7, and if I report that I’m at 8 or above, it would be an average 10. Trigeminal neuralgia is one of the more painful conditions known to medicine, and Ehlers-Danlos, which my TN is secondary to, has a range of systemic symptoms that create a high level of daily pain. Most of the time, I just grit my teeth and keep going, because the pain meds have side effects that I want to avoid if at all possible.)

Yep. Women, especially fat middle-aged women (*points at self*), are often undertreated for pain, or told that it’s “all in our heads,” when we have a physical problem that requires medical intervention.

You may be interested in this recent report — it’s less rigorous than a study, but it’s fairly staggering in its results — I’d love to see a full-on research team tackle the same questions, with a control group in order to get the most accurate findings.

I wonder if it might help to have an actual written letter from a medical professional detailing your type of anaesthetic resistance, how it works, and what alternative methods of pain relief might be more effective?

An awful lot of people do exaggerate their pain-relief needs, so I can certainly understand how doctors might automatically dismiss lay people making claims of this. (If I’ve learned one thing from decades of working in customer service type jobs, it’s that *everybody* thinks their situation is unique and special, whether it is or not).

However someone who has actually gone to the trouble of getting their condition documented and is able to provide paperwork is usually in a better position.

(I have literally asked my doctors to write LIDOCAINE INSENSITIVE – MARCAINE ONLY on the front of my chart . . . and yet, the last time I had a sedation procedure, just as I was losing consciousness, I heard the anesthetist say that he was putting lidocaine in my IV. I had to try to speak through the mask to say “NO LIDOCAINE!” I’m really fortunate that it’s an insensitivity, not an actual allergy, or they probably would have killed me on the spot.)

Needless to say, I had a word with them after the procedure — it’s a damn good thing that it was an endoscopy and not an actual surgery, because I would have woken up feeling everything they’d done.

It’s much harder to achieve analgesia after the fact, and it normally takes more medication and is harder on the patient, rather than numbing or giving painkilling drugs pre-procedure.

Honestly, I’m not sure which, if any, of my doctors would be willing to produce a letter of that type. I’m not aware of a routine test for lidocaine insensitivity, and many doctors are unwilling to write letters of testimony for something that they haven’t proven themselves. They can observe an absence of response to lidocaine, but I’m not sure who would be able/willing to *diagnose* it.

It’s a good thing to have on a MedicAlert type bracelet, but many of us don’t wear jewelry on a daily basis, and that’s most helpful in an emergency than it is for a routine procedure like dentistry. (Also, MedicAlert bracelets can be customized to say pretty much anything, so it’s not the same as a doctor’s letter.

Having “lidocaine-insensitive” in my notes is useful, but I still have been challenged by doctors about it, and the incident with my daughter and the thyroid biopsy consisted of a medical professional waving a large-bore needle by her neck while authoritatively telling us that (a) there is no such thing as lidocaine insensitivity, and (b) that a procedure done in the same hospital the previous week had been done under lidocaine anesthesia.

(Since we had personally spoken with the doctor and anesthesiologist in that case, and had been SHOWN THE VIAL OF MARCAINE, I told him to call the surgeon who had done the bone-marrow biopsy to verify. He refused, saying that it said “lidocaine” on the records. I told him that it was likely that the record had been prepared as a boilerplate biopsy statement, and that whoever was dictating had probably forgotten to switch the anesthetic name, since the discussion with the doctor/anesthesiologist happened directly before the surgery, so anything prepared in advance would have had the “standard” anesthesia info.)

Getting a doctor’s letter, if you can, is a good idea — I’m just not sure how practical it would be.

(I’ve seriously considered tattooing it on the inside of my wrist — in case of emergency, I’d like to believe that I would receive adequate pain treatment during the time that I was unable to communicate.)

The frustrating part of the belief that “an awful lot of people do exaggerate their pain-relief needs” is that we *know*, through multiple studies, that a lot of pain is undertreated. (And some people who exaggerate their claims of pain are doing so in order to have “extra” medication for the times when pain goes untreated — in the US, access to healthcare isn’t a given, and people are likely to hang onto an extra ten Percocet for the next time they hurt their back and can’t go to the doctor. I’m not saying that this is wise or admirable, but it’s a major issue here.) Which is not to say that there aren’t addicts or people diverting drugs for sale . . . but it’s something to consider.

Asking a doctor to use a different local anesthetic (which has no potential for euphoria, diversion, or misuse) isn’t the same as asking for morphine for a headache — I know that some people exaggerate or want the “big guns” and recognizable names, but a patient saying that they’re lidocaine/novocaine-insensitive and need a different local is unlikely to be exaggerating or lying to the doctor — and yet, they’re often treated as if they are.

Thank you! I just signed up to join (, you don’t have to be a member to comment, FWIW, if you’d like to drop by), because this seems like a really neat community — thanks for the heads-up!

(I don’t have a ton of time to participate right now, because leaving the country next week to stay with my Dearly Beloveds in the UK for the rest of the month — but I look forward to reading more in the future.)

I’m so glad you like the comm and joined 🙂 I founded it when, newly crippled myself, I wasn’t finding very many kind people online. Success! I’m proud to say that the comm thrives with plenty of kind people.

You’re right that people don’t have to be members to comment there. They have to be members to post, though, ie starting new threads. I set it up that way as a precaution against bots and trolls. My only criterion for joining the comm is that a person has to convince me that phe’s an actual person. A few bots have appeared, and been banned. Trolls haven’t appeared.

Have a great time in the UK. My homeland 🙂 To celebrate, I’ll use my Union Jack tea-mug icon.

I wonder if it might help to have an actual written letter from a medical professional detailing your type of anaesthetic resistance, how it works, and what alternative methods of pain relief might be more effective?

An awful lot of people do exaggerate their pain-relief needs, so I can certainly understand how doctors might automatically dismiss lay people making claims of this. (If I’ve learned one thing from decades of working in customer service type jobs, it’s that *everybody* thinks their situation is unique and special, whether it is or not).

However someone who has actually gone to the trouble of getting their condition documented and is able to provide paperwork is usually in a better position.

It’s 1/10 the strength of morphine, but it is an opioid. Very few people would choose to abuse it — the level of pain relief or potential slight euphoria is outweighed by the fact that, to take an amount to actually get “high,” you’d normally be dealing with severe nausea and vomiting. (I have to take Zofran at the same time, when using a fairly low dose as medically-appropriate, or it makes me really sick.)

I think it absolutely should be prescription-only, because of the potential for side effects with so many other meds . . . but saying that I think that certain meds should only be given by a doctor who is aware of any of their patient’s other meds doesn’t mean that I think the drug should be scheduled.

It’s often the only relief many low-income people in pain get — it’s a $4 generic prescription at WalMart, or was, before the scheduling. Probably more. (Many supposed “pain clinics” only prescribe tramadol for pain, and rely on “trigger point injections,” which can be harmful in their own right, for a source of regular income.)

So — is it technically “addictive”? It causes withdrawal — but that’s drug habituation, not drug addiction. (Like many antidepressants, or drugs like Lyrica or Prednisone, you shouldn’t stop tramadol cold-turkey, or you will go into withdrawal. That is *not* the same as drug addiction — if you’re taking the medication as prescribed, habituation is expected. Any responsible doctor who was taking a patient *off* daily tramadol would arrange for a step-down period, rather than stopping abruptly.) Tramadol does have a longer withdrawal period than some other drugs, so it’s important that step-down be done under medical supervision.

Drug *addiction* is a *behavior* and a type of *brain dysfunction*, considered to be both a mental and physical illness by most authorities.

Addictive behaviors often don’t discriminate between drugs (i.e., someone who is abusing heroin would likely abuse tramadol, but they’d also likely abuse alcohol and anything else they can get their hands on.) That doesn’t make tramadol a drug with a huge abuse/addiction potential.

Addiction is a chronic, often relapsing brain disease that causes compulsive drug seeking and use, despite harmful consequences to the addicted individual and to those around him or her. Although the initial decision to take drugs is voluntary for most people, the brain changes that occur over time challenge an addicted person’s self control and hamper his or her ability to resist intense impulses to take drugs. (Source: Drugabuse.gov)

So — agreed, almost entirely, although I do think it’s important to note the habituation/withdrawal issue, which many people mistake for “addiction.”

A lot of people think that if you go through withdrawal when discontinuing a medication or missing a dose, that makes you an “addict” — which is very untrue. Physical habituation simply means that you are using a medication frequently enough that your body reacts when the medication is removed — it’s totally different from addiction.

And my daughter still doesn’t have her meds, because the doctors who were supposed to be sending records . . . didn’t.

(I have literally asked my doctors to write LIDOCAINE INSENSITIVE – MARCAINE ONLY on the front of my chart . . . and yet, the last time I had a sedation procedure, just as I was losing consciousness, I heard the anesthetist say that he was putting lidocaine in my IV. I had to try to speak through the mask to say “NO LIDOCAINE!” I’m really fortunate that it’s an insensitivity, not an actual allergy, or they probably would have killed me on the spot.)

Needless to say, I had a word with them after the procedure — it’s a damn good thing that it was an endoscopy and not an actual surgery, because I would have woken up feeling everything they’d done.

It’s much harder to achieve analgesia after the fact, and it normally takes more medication and is harder on the patient, rather than numbing or giving painkilling drugs pre-procedure.

Honestly, I’m not sure which, if any, of my doctors would be willing to produce a letter of that type. I’m not aware of a routine test for lidocaine insensitivity, and many doctors are unwilling to write letters of testimony for something that they haven’t proven themselves. They can observe an absence of response to lidocaine, but I’m not sure who would be able/willing to *diagnose* it.

It’s a good thing to have on a MedicAlert type bracelet, but many of us don’t wear jewelry on a daily basis, and that’s most helpful in an emergency than it is for a routine procedure like dentistry. (Also, MedicAlert bracelets can be customized to say pretty much anything, so it’s not the same as a doctor’s letter.

Having “lidocaine-insensitive” in my notes is useful, but I still have been challenged by doctors about it, and the incident with my daughter and the thyroid biopsy consisted of a medical professional waving a large-bore needle by her neck while authoritatively telling us that (a) there is no such thing as lidocaine insensitivity, and (b) that a procedure done in the same hospital the previous week had been done under lidocaine anesthesia.

(Since we had personally spoken with the doctor and anesthesiologist in that case, and had been SHOWN THE VIAL OF MARCAINE, I told him to call the surgeon who had done the bone-marrow biopsy to verify. He refused, saying that it said “lidocaine” on the records. I told him that it was likely that the record had been prepared as a boilerplate biopsy statement, and that whoever was dictating had probably forgotten to switch the anesthetic name, since the discussion with the doctor/anesthesiologist happened directly before the surgery, so anything prepared in advance would have had the “standard” anesthesia info.)

Getting a doctor’s letter, if you can, is a good idea — I’m just not sure how practical it would be.

(I’ve seriously considered tattooing it on the inside of my wrist — in case of emergency, I’d like to believe that I would receive adequate pain treatment during the time that I was unable to communicate.)

The frustrating part of the belief that “an awful lot of people do exaggerate their pain-relief needs” is that we *know*, through multiple studies, that a lot of pain is undertreated. (And some people who exaggerate their claims of pain are doing so in order to have “extra” medication for the times when pain goes untreated — in the US, access to healthcare isn’t a given, and people are likely to hang onto an extra ten Percocet for the next time they hurt their back and can’t go to the doctor. I’m not saying that this is wise or admirable, but it’s a major issue here.) Which is not to say that there aren’t addicts or people diverting drugs for sale . . . but it’s something to consider.

Asking a doctor to use a different local anesthetic (which has no potential for euphoria, diversion, or misuse) isn’t the same as asking for morphine for a headache — I know that some people exaggerate or want the “big guns” and recognizable names, but a patient saying that they’re lidocaine/novocaine-insensitive and need a different local is unlikely to be exaggerating or lying to the doctor — and yet, they’re often treated as if they are.

i had a ‘lovely’ experience at planned parenthood once where a doctor suddenly shoved a not-very-lubed speculum in and i shed a tear because it hurt. i think i may’ve recently gotten the non-hormonal iud, i can’t remember, and i periodically have bad cramps outside of my period.

when he saw the tear, he asked if i was a victim of sexual abuse.

(i have never experienced pain during an exam before or since, and it was probably partly just due to shock… i’d never had a doctor do that suddenly vs. a relatively slow, narrated speech during a slow process)

i wonder if this post has your high score for comments, we all have something to say about how doctors don’t listen. i also have a problem with the local anesthetic in dentists offices and no matter how many times i say it they still give me the wrong meds the first time and then they get to watch me hyperventilate and black out and then they’re like “oh, epinephrine eh? i told you that wasn’t an allergy” no fun, anesthetics are pretty fuckin important.

One of my more minor (!) EDS-related issues is a cardiac disorder (Postural Orthostatic Tachycardia Syndrome — my daughter has it badly enough that she developed cardiomyopathy at age 20.)

While I do tell doctors/nurses/dentists that I only want epinephrine-containing products if bleeding is a potential *emergency*, I’ve had anesthetics with included epinephrine given before, without warning . . . and *oh* do the medical professionals flip out when that, predictably, makes my heart start flopping around like an epileptic fish >:P

(I agree, the issue of “Patient clearly states a problem up-front, doctors don’t believe it until they see it, lather, rinse, repeat” is a serious downside to the medical profession — I understand that many doctors assume that patients are wrong or exaggerating, but that kind of attitude is going to wind up killing people.)

i wonder if this post has your high score for comments, we all have something to say about how doctors don’t listen. i also have a problem with the local anesthetic in dentists offices and no matter how many times i say it they still give me the wrong meds the first time and then they get to watch me hyperventilate and black out and then they’re like “oh, epinephrine eh? i told you that wasn’t an allergy” no fun, anesthetics are pretty fuckin important.

thanks to electronic medical records, things are about to get a lot worse for patients

I read all the comments. Now I feel less alone. Thank you all!

Latest ebola scare in Dallas is at least bringing up that electronic records hinder more than help. But I know that people like to believe anything a computer says so if the med staffer is reading a screen that contradicts patient, patient will be dissed even more.

Thanks to lawyer penpals tied to “right to die at home and decline medically futile stuff” I’m changing my advance directive and the emergency intel in my wallet that’s now stapled closed around my Blue Cross card so maybe this time EMS will actually read the damn thing. But it includes that any procedure or drug that I did not consent to or my medical POA did not consent to constitutes assault and I will be pressing charges. Why do nurses get to inflict misery and not be held accountable? And I will never again swallow things in a paper cup handed me. If I didn’t see the pharmacist open the bottle, which I will look at myself, forget it.

thanks to electronic medical records, things are about to get a lot worse for patients

I read all the comments. Now I feel less alone. Thank you all!

Latest ebola scare in Dallas is at least bringing up that electronic records hinder more than help. But I know that people like to believe anything a computer says so if the med staffer is reading a screen that contradicts patient, patient will be dissed even more.

Thanks to lawyer penpals tied to “right to die at home and decline medically futile stuff” I’m changing my advance directive and the emergency intel in my wallet that’s now stapled closed around my Blue Cross card so maybe this time EMS will actually read the damn thing. But it includes that any procedure or drug that I did not consent to or my medical POA did not consent to constitutes assault and I will be pressing charges. Why do nurses get to inflict misery and not be held accountable? And I will never again swallow things in a paper cup handed me. If I didn’t see the pharmacist open the bottle, which I will look at myself, forget it.

Thank you! I just signed up to join (, you don’t have to be a member to comment, FWIW, if you’d like to drop by), because this seems like a really neat community — thanks for the heads-up!

(I don’t have a ton of time to participate right now, because leaving the country next week to stay with my Dearly Beloveds in the UK for the rest of the month — but I look forward to reading more in the future.)

One of my more minor (!) EDS-related issues is a cardiac disorder (Postural Orthostatic Tachycardia Syndrome — my daughter has it badly enough that she developed cardiomyopathy at age 20.)

While I do tell doctors/nurses/dentists that I only want epinephrine-containing products if bleeding is a potential *emergency*, I’ve had anesthetics with included epinephrine given before, without warning . . . and *oh* do the medical professionals flip out when that, predictably, makes my heart start flopping around like an epileptic fish >:P

(I agree, the issue of “Patient clearly states a problem up-front, doctors don’t believe it until they see it, lather, rinse, repeat” is a serious downside to the medical profession — I understand that many doctors assume that patients are wrong or exaggerating, but that kind of attitude is going to wind up killing people.)

I’m so glad you like the comm and joined 🙂 I founded it when, newly crippled myself, I wasn’t finding very many kind people online. Success! I’m proud to say that the comm thrives with plenty of kind people.

You’re right that people don’t have to be members to comment there. They have to be members to post, though, ie starting new threads. I set it up that way as a precaution against bots and trolls. My only criterion for joining the comm is that a person has to convince me that phe’s an actual person. A few bots have appeared, and been banned. Trolls haven’t appeared.

Have a great time in the UK. My homeland 🙂 To celebrate, I’ll use my Union Jack tea-mug icon.

My first gyno exam was performed on me when I was 18, by my mother’s male doctor, with a very large, cold, not-well-lubricated metal speculum. When I expressed (a great deal of) discomfort, the male doctor’s response was essentially to tell me to lie back and think of England.

Because I’d always had irregular cycles, when I was 22 I asked my GP if I could get on birth control to regulate my periods. He said “Yes, but you need to have an exam first.” Fortunately, the exam was performed by his female NP and her associate. I was shocked as hell when I described my difficulty with my first exam, and the NP looked at her associate (also female) and said “Give her the smallest plastic speculum we have, and use lots of lubricant.” In order, I think my internal responses were “They come in plastic?! They come in sizes?!”

It took me twenty years to find a gyno who took my concerns seriously. So seriously, in fact, that she recommended a hysterectomy almost immediately. I grinned, practically leapt off the table, and said “Take it, take it all, take it now! How soon can you do the surgery?” I had the surgery ten years ago, and I’ve been orders of magnitude happier as a result.

My pain threshhold has always been incredibly high. I was born with hydrocephalus, which is a brain disorder that can be fatal if it isn’t treated–usually with a surgical drainage tube called a shunt, or with a different procedure called an ETV. I had my first shunt put in when I was three weeks old (I’m almost 43 now); I’ve had a total of 17 surgeries.

In my teens I was diagnosed with Chronic Fatigue Syndrome, a diagnosis which was ultimately modified to fibromyalgia about fifteen years ago.

I hurt my foot last year, severely enough that I needed a “walking boot.” When the nurse asked if I wanted a script for pain meds, I shocked the hell out of her by turning her down. I said “Here’s the problem. Pain medications make me stoned out of my gourd, but they do nothing to stop the pain. So I can either be stoned out of my gourd, and still in pain, or completely aware of my surroundings, and still in pain. I’d rather keep my faculties, thanks.”

TL;DR: My pain threshhold is about like yours. When a doctor asks me to “describe my pain on a scale of 1-10,” I have to remind them that I’m hydrocephalic and I have fibromyalgia. The “normal” pain I live with every day is around 5-7. Hurting my foot was maybe 7-8. Full-blown shunt failure, where I’ve passed out from the pain, is easily a 12, if not worse.

My mother has very tiny veins, very close to the surface of her skin. She’s nearly 68, and they still have to use a pediatric butterfly needle on her when they draw blood, otherwise she gets a huge bruise. Maybe 20 yrs ago she had to go in for some routine bloodwork. She told the tech about the butterfly needle, the tech readily complied, and she left with almost no bruise. They called her back a week later–something had gone wrong and they needed to redo the bloodwork. She had a different tech for the second round, who literally rolled her eyes at my mother. The tech proceeded to use the standard sized needle, and my mother ended up with a huge, raised, eggplant purple, softball-sized bruise on her inner arm that didn’t go away fully for a month.

My mother has very tiny veins, very close to the surface of her skin. She’s nearly 68, and they still have to use a pediatric butterfly needle on her when they draw blood, otherwise she gets a huge bruise. Maybe 20 yrs ago she had to go in for some routine bloodwork. She told the tech about the butterfly needle, the tech readily complied, and she left with almost no bruise. They called her back a week later–something had gone wrong and they needed to redo the bloodwork. She had a different tech for the second round, who literally rolled her eyes at my mother. The tech proceeded to use the standard sized needle, and my mother ended up with a huge, raised, eggplant purple, softball-sized bruise on her inner arm that didn’t go away fully for a month.